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BRAINMETSBC.ORG is a web resource for breast cancer patients with brain metastases and their families, as well as anyone interested in learning more about brain and other central nervous system metastases of metastatic breast cancer. BRAINMETSBC.ORG offers information about diagnosis and treatment, shared patient experiences, interviews with scientists and physicians, and links to recent research, clinical trials, and other resources.

BRAINMETSBC.ORG was developed as a public service by patient advocates Musa Mayer and Helen Schiff as part of their paid employment with a research Center of Excellence (COE), Studies Directed Toward the Eradication of Brain Metastases of Breast Cancer, funded by the Department of Defense Breast Cancer Research Program (DOD BCRP). The COE was a multi-institutional research consortium of scientists, physicians and advocates, under the direction of Dr. Patricia Steeg, a noted researcher in the field. Now that the grant has expired, the BRAINMETSBC.ORG website is still hosted by Pete Bevin but is no longer affiliated with the DoD BCRP or supported by the Geneva Foundation, who administrated the COE grant, which has now ended. The website is still being updated quarterly on a volunteer basis by advocates Helen Schiff and Musa Mayer, who initially developed the site in 2007. BRAINMETSBC.ORG is no longer medically reviewed by physicians.

BRAINMETSBC.ORG: New web resource for breast cancer patients with brain metastases to launch at 2007 San Antonio Breast Cancer Symposium

Most drugs that help control metastatic breast cancer elsewhere in the body are not able to penetrate into the brain. So, as improved treatments extend survival, increasing numbers of women with metastatic disease face a diagnosis of brain metastases. In fact, 10 to 16 percent of all breast cancer patients whose disease has spread will develop brain metastases, and for those whose cancer is HER2-positive, a brain metastasis incidence of 25 to 40% has been reported.

Learning breast cancer has spread to the brain is frightening. Patty Z., who has been living with brain metastases for several years, expressed how she felt at first. â€śMy first thought was NOT MY BRAIN! To me, that meant I would lose me. The threat of dying was not uppermost in my fears, but losing my identity and/or becoming totally dependent on someone else for personal needs.â€ť

In addition to top medical care, women coping with a diagnosis of brain metastases need information and support. And they need a reason to hope.

Now, thanks to the first web resource developed just for them, breast cancer patients with brain and other central nervous system metastases can feel less alone with their fears. At BRAINMETSBC.ORG, they and their families can draw hope from the stories and experiences of nearly 30 other women who have walked in their shoes.

Just as important, they can access up-to-date information on symptoms, diagnosis, treatment, clinical trials and emerging research, medically reviewed by expert physicians and researchers.

Created by patient advocates Musa Mayer and Helen Schiff, BRAINMETSBC.ORG is part of a five-year, multi-disciplinary Center of Excellence research grant funded by the Department of Defense Breast Cancer Research Program. Under the leadership of noted NCI researcher Dr. Patricia Steeg, the top scientists and translational researchers in this field work are working collaboratively to create animal models and analyze gene expression from tissue samples, both necessary paths to new treatments. Until the Center of Excellence began its work, the study of brain metastasis was among the most neglected areas in breast cancer research. It remains one of the most challenging.

â€śBut the tide is beginning to turn,â€ť says Steeg. â€śWe have our first preclinical models, our first gene expression data from surgical samples, and our first leads on drugs that penetrate into the brain. With our advocates as guides, we hope to analyze preclinical data on at least 10 compounds within the next few years.â€ť

The role of advocates, who represent patient perspectives, is important to the Center of Excellence. Author and breast cancer survivor Musa Mayer has focused her advocacy on women with metastatic breast cancer for over a decade, and has written one of the very few books on the subject for patients and their families. A firm believer in the power of shared experience, Mayer says, â€śWomen newly diagnosed with brain metastases fear both the disease and its treatments. It gives them great hope to read the words of women who have lived for years with that same diagnosis, with very good quality of life.â€ť

Advocate and breast cancer survivor Helen Schiff is a member of SHARE, a New York-based Self-Help Organization for Women with Breast or Ovarian Cancer, where she devotes much of her time to organizing and educating breast cancer advocates.

BRAINMETSBC.ORG will continue to grow, Mayer and Schiff say. They are planning more interviews as well as more on new treatments and emerging research. And of course, more patient stories.